Remembering Terri Schiavo

We want to pay our respects to Terri Schiavo and her family by continuing to remember her long after her hastened and tragic death. We also want to pay our respects by learning from this devastating situation so that others will be spared similar state-sanctioned executions and the heartbreak that attends them.

What did we learn? Was it that we better have a clear directive that provides a convincing statement of our wishes related to life-sustaining treatment? Without one, will we be at the mercy of those in our family who may want to hasten our deaths for personal reasons? If someone objects to the hastening without such a directive, will they likely find themselves and their loved one at the mercy of a judge with the judicial discretion to rule on healthcare decisions in their stead based on the testimony of other family members and “experts”?

Will such experts reason like the bio-ethicist presenting a continuing legal education course on medical ethics who responded to the following ethical dilemma as presented by an attendee, “So now here you are with a patient who has a feeding tube and you can’t get it removed.” The “ethical” response, “You want a feeding tube removed, call me. I’ll get it removed.” (1)

Based on that example, and the cases like Terri’s that LLDF handles week in and week out, we see that the rhetoric surrounding these cases is not about the right to refuse medical treatment—it is about forcing the death of someone who needs a feeding tube because the condition that requires it has become an inconvenience for the individual in the position of substituting his judgment for the patient’s. Whether or not the patient wants the tube removed is irrelevant in today’s culture of death.

Take the recent case of U.K. citizen Leslie Burke, his case is described more completely in Wes Smith’s article in this issue of Lifeline, who is suing for the legal right to receive a feeding tube if he loses the ability to swallow. Medical authorities and the British government have appealed the trial court decision giving Mr. Burke that right, promulgating the theory that sustaining his life is a waste of precious resources. We at LLDF heard the “precious resource” mantra from those who wanted to remove Robert Wendland’s feeding tube; we hear it regularly as we intervene on behalf of patients under threat of death and we heard it in Terri Schiavo’s case.

This type of rhetoric has led our culture of death to “futile care.” Hearken back to Wesley Smith’s article in The Weekly Standard, (2) wherein he prophetically wrote “‘Futile care theory’ holds that when a physician believes the quality of a patient’s life is too low to justify life-sustaining treatment, the doctor is entitled to refuse care as ‘inappropriate’— even if the treatment is wanted. It is the equivalent of a hospital putting a sign over its entrance stating, “We reserve the right to refuse service.’”

In its 1999–2000 Legislative Session, the California Legislature set the stage to implement futile care by passing the Uniform Healthcare Decision Act, (3) which, among other things, delineated the duties of healthcare providers in Probate Code sections 4730, et seq. The language in sections 4730 and 4734 is especially telling in light of futile care theory: §4730. Before implementing a health care decision made for a patient, a supervising health care provider, if possible, shall promptly communicate to the patient the decision made and the identity of the person making the decision. [emphasis added].

§4734. (a) A health care provider may decline to comply with an individual health care instruction or health care decision for reasons of conscience. Back to the original question—what did we learn from Terri’s case? Is it that we need an advanced directive? As we read in section 4734, in California a directive may not have any influence with health care providers whatsoever. Does the meaning of “individual health care instruction or health care decision” include an advance directive? It really isn’t clear from reading the Uniform Health Decision Act but the argument can be made that the health care provider does reserve the right to refuse service.

It may be that there is another lesson we need to learn. It was succinctly stated by Pat Anderson, formerly lead counsel for Terri’s parents, Bob and Mary Schindler. When asked if she agreed that having an advance directive for health care was the lesson to be learned from Terri’s case, she answered yes, but with one caveat: “Be careful who you marry.” There are many lessons to be learned from Terri Schiavo’s tragic case. We think one key lesson is to take protective measures in anticipation of the eventuality of your incapacitation. We encourage our readers to implement such measures by suggesting they take great care in the following matters: 1) who you marry, 2) who you pick for your surrogate, 3) who you choose as your health care provider, and, 4) carefully document your wishes in an advance directive. If we all take these precautions, lives will be saved. As we remember Terri Schiavo we are thankful to her and her parents for their lifesaving witness. This may be of little comfort to the Schindlers after the loss of Terri, but to the extent it does give them comfort, we are grateful. May God rest Terri Schiavo’s soul.